[00:00:00] Adam Walker: From Susan G. Komen, this is Real Pink, a podcast exploring real stories, struggles, and triumphs related to breast cancer. We’re taking the conversation from the doctor’s office to your living room
[00:00:18] This is the second part of our episode with Isabel O’Gara. To listen to part one, check out last week’s episode Welcome to the Komen Health Equity Revolution series on Real Pink, where patients, advocates, researchers, and community partners come together to talk honestly about what’s standing in the way of breast health equity and what we’re doing to change it.
[00:00:38] I’m your host, Adam Walker. It’s National Breast Cancer Awareness Month, and this conversation is a reminder of why awareness and taking action matters at every life stage, including pregnancy and early motherhood. My guest today is Isabel O’Gara. Isabel was diagnosed with breast cancer while pregnant, and instead of having her concerns dismissed, something far too many women experience, her team at Yale New Haven listened and acted fast.
[00:01:07] Now she’s finishing treatment, preparing for a mastectomy, and speaking about what she’s learned along the way, from breastfeeding after diagnosis to advocating for legislation that could help other families. Isabel, welcome to Real Pink.
[00:01:20] Isabel O’Gara: Hi. Thank you for having me. I’m very excited to be here.
[00:01:23] Adam Walker: So let’s talk about postpartum and breastfeeding and and some of that for a minute here.
[00:01:29] It’s easy for, you know, symptoms in postpartum and for breastfeeding to, to sort of be written off as normal. Why do you think real warning signs tend to get missed in that window?
[00:01:40] Isabel O’Gara: Yeah. I think it’s probably a combination of both women dismissing no- like bodily changes as pregnancy, postpartum, et cetera, changes, and dismissal by the healthcare system.
[00:01:57] When you are pregnant or postpartum, your body is changing literally every day, like all of a sud- like for example, one day I had like size 9 feet, and then the next day I had like size 11 feet, and my feet like were so big and swollen and I was like, “Okay. Well, I guess this is just the size shoe I am for the rest of the pregnancy.”
[00:02:17] But it’s compounded by the fact that women can be, and often are, dismissed by healthcare providers for symptoms that they bring up, and it’s not even specific to just breast cancer changes and breast changes. It can be for changes and symptoms that OBGYNs are trained to identify for very common pregnancy conditions such as preeclampsia or gestational d- diabetes.
[00:02:46] So if you have that background of something that is screened for by your OB, is very well known as a pregnancy complication, and if you have the experience of like those symptoms being dismissed, it’s very hard then to have a lump, which affects very, like 1 to 2% of pregnancies, show up in your breasts and you show it to your OB and they dismiss that as Oh, it’s just regular breast changes.”
[00:03:15] Like wh- why would you then question them or push them when They have the authority over your healthcare as a doctor to order the imaging, to order the tests, and they’re the experts. They are the experts in this phase of your life. They know what signs to look out for. But I think it’s a combination of both.
[00:03:41] I think women can dismiss it and not bring it up to them because breast exams are not a routine part of prenatal or postpartum care. And if you Have been dismissed by your provider in the past by something that you felt as though was important, and then maybe just resolved on its own, or just truly was dismissed and then it was a problem.
[00:04:02] You’re not going to catch the, the tumor before it’s very large or spread. And I mean, I, I almost didn’t say anything because I was just thinking this is just a normal breast change, but I remembered it and brought it up. But the, the medical system reinforces this. Mam- mammography is not standard for screening below the age of 40.
[00:04:29] It’s… I also have very dense breast tissue. It’s unreliable in dense breast tissue. And it’s relatively rare to have pregnancy-associated breast cancer. It affects approximately one in 3,000 pregnancies. It’s there’s a better chance that it’s not breast cancer than it is. And I, and the statistics confirm this.
[00:04:51] There’s an average 150-ish day gap from first symptom of pregnancy-associated breast cancer to diagnosis, so there’s a delay of all of these changes happening. And I think it’s also, you put it in the context of kind of what I’ve been talking about your… Typically, your focus at this time is not your own health.
[00:05:13] It’s the health and wellbeing of your child, and especially if you have more of a postpartum breast cancer case, you’re sleep-deprived, you have a newborn that’s extremely demanding, your breasts are changing constantly as you’re establishing milk supply. And the other piece of this for postpartum breast cancer, you go from pregnancy where you see a provider once every couple of weeks to in postpartum you see your provider at six weeks postpartum, and that’s it.
[00:05:44] So, it’s… There’s also just a lack of access and screening. But I think to the point I made before the… I strongly feel as though breast exams… And it’s, there’s, it’s so, there’s no cost to adding a two-minute breast exam to an OB appointment to just check for changes. I strongly feel as though it should become standard of care for prenatal visits, but I think all of those factors together create this perfect storm where more often than not, pregnancy and postpartum breast cancer are diagnosed at a later stage with spread.
[00:06:23] And it’s just an unfortunate result of all of these things happening at the same time.
[00:06:29] Adam Walker: All right. Let’s get back to your experience for a minute. I’ve got a couple of questions there. How does having young children factor into your treatment and what kind of support do you have around you for that?
[00:06:45] Isabel O’Gara: Yeah. It strongly factors into treatment and planning, but I am so unbelievably lucky to have the greatest support system in my husband, my, my parents, my in-laws, my friends, family, neighbors, and carry my family through this really hard period. My… Yeah, my h- my husband has been full-time caregiver to me and to our toddler and to our newborn.
[00:07:24] He has held our family through a really challenging time of our lives, and has done so without any complaint. And even cancer caregivers deserve all the flowers in the world. There’s no days off when you’re a cancer caregiver. There… He was sick, this was maybe like a month or so ago, he was sick, and I had just had a, like a triple infusion, so I was useless, and we still have these two small, cute children.
[00:07:57] He just powered through it. Sa- same with my parents and my in-laws. We have had one of them one set of grandparents in our house since my diagnosis in March. We’ve maybe had five days as a family without them there, which is ni- 99% blessing, 1, 1% curse. There’s There’s always some times where you’re like, “Oh, I shouldn’t be a full-grown adult living with my parents or my in-laws.”
[00:08:25] But we’re truly so blessed. We could not get through this period of life without them. They are so foundational to my ability to be able to go to treatment, for my husband to be able to take me to every chemotherapy, and I’ve never had to go alone. There’s very few doctor’s appointments I’ve even gone to alone.
[00:08:48] And all of that has just made it possible, because being in active treatment every single day with small children that just still see you as Mommy gives you zero time off. There’s no days off from being a cancer patient or caregiver, and there are no days off from being a present parent. There’s days when we lean on our support system.
[00:09:14] There’s days when the grandparents take over and really try and help us or our friends our network has supported us with care packages and gift cards so we don’t have to cook, and meal trains and friends in the… friends in our neighborhood, like, picking our kids up to watch them and entertain them.
[00:09:38] In just a normal circumstance, like if you’re just welcoming a child that takes a village. Welcoming a new child with cancer, it takes literally a small country, is what I describe it as. We are at the hospital At least two days a week right now, and that’s probably a light week. That’s like blood draws, infusions, MFM appointment, appointments when I was pregnant integrative health appointments, like layered on top of everything, and then you have to coordinate childcare and how that all fits together.
[00:10:15] That is a huge ask for a patient to be able to s- step up to the plate and provide with their time, financially, emotionally, physically. And I just will never be able to thank our support system of family and friends. Oh, our nanny, I didn’t even mention her, but she’s also… She is a part of our family.
[00:10:40] It… When you look at all that you need to be a cancer patient, it becomes less of a wonder why some patients slip through the cracks and don’t have the best outcomes after treatment, and outcomes don’t even necessarily mean the statistics reported in a study of overall survival rate.
[00:10:59] There’s so much lifelong impact that come from being a cancer patient that is not just your statistic and w- what your ca- your clear margins are, et cetera. You have, you, you’ll have lifelong fer- fertility impacts, neuropathy, debt, and those are so dependent on your access to support and good care.
[00:11:21] So I hope that in the next frontier of cancer treatment, we can create treatments and therapies that allow you to live alongside your disease instead of being consumed by it, more like, like an HIV or a diabetes kind of treatment. Because you’re… I truly don’t know how patients without strong support systems do it, and I am will forever be indebted to anyone in our support network that has held us during this time.
[00:11:53] It means more to my family than I could ever describe.
[00:11:56] Adam Walker: Yeah. Sounds like a great community you’ve got. And I think it’s easy for me, you know, sitting here talking to you to also somewhat forget that you’re like… You’re in the middle of it right now. You’re still… You’re going through treatment right now.
[00:12:08] Yeah.
[00:12:09] Isabel O’Gara: I have chemo tomorrow.
[00:12:10] Adam Walker: You’ve got chemo tomorrow and you’ve got a, you’ve got a mastectomy coming up and so-
[00:12:14] Isabel O’Gara: Yeah …
[00:12:15] Adam Walker: L- tell me a little bit about that. I mean, how are you sort of preparing yourself for that?
[00:12:20] Isabel O’Gara: Yeah. I mean, probably the honest answer is I try to not think about it because I just am dreading it.
[00:12:29] I… So I… Hopefully nothing gets delayed. I ring the bell next week, and then I will have surgery a month or so later. And emotionally, well, I don’t know if anything can really prepare you emotionally to lose a part of your body. I think A lot of people think of a double mastectomy as, it like it’s like surgical prevention, but it’s more than just surgery.
[00:12:59] It’s really more of an amputation because it’s a piece of your body that’s never going to come back. Like sensation-wise, nerve-wise, function-wise, it’s going to be forever different. And at least for me, it’s also emotional to lose that part of my body that fed and nourished my daughter for so long. Then there’s also the whole aspect of like it, this is a part of your body that is so tied with like womanhood and motherhood and grieving that chapter really closing, at least for motherhood.
[00:13:31] But I think I’m just very nervous of how to manage it with two young children. Knowing that the night before surgery, like when I put my two kids to bed, that’s going to be the last time I hold them and pick them up for four to six weeks is really hard. And especially for… My son is 16 weeks old.
[00:13:56] 6 weeks is a big it’ll be a very different child I pick up afterwards. And I think it’s layered with the grief I described before of just losing the postpartum I envisioned for myself. I envisioned myself breastfeeding and cuddling and being present and not being, like, bedridden, unable to move my arms and pick them up and have drains hanging on my body.
[00:14:24] So having to delegate the mom duties of consoling, caring, being, like, the primary emotional support for your child while you recover is a really painful reality of having a double mastectomy. But I just try and anchor myself to the same motto I’ve now mentioned multiple times. I can do anything for a lifetime with my kids, and six week…
[00:14:48] It’ll be a long six weeks for the recovery, and then I’m going to do a second stage reconstruction a couple months after. But if I try and frame it in, these are several weeks that I have to endure to be alive for a very long time with my children I can do it.
[00:15:08] Adam Walker: Yeah. Yeah, you can do it. I, we, I’ve only known you for a few minutes, and I-
[00:15:13] I’m sure you can do it. I believe in you. I really do.
[00:15:15] Isabel O’Gara: But again- Yeah … The support for that it like, this is also just, I think compounds outcomes aren’t always necessarily like survival rate or whatever. You, I, you can’t I couldn’t do this without my support system. I couldn’t do this without my partner and my mom and my brother-in-law and my grand- grandfather’s coming and helping them, because I can’t get out of bed and move my arms, but someone still needs to take care of these children.
[00:15:44] So yeah, it’s really a group effort to be able to get through that, that hurdle. But I’m really looking forward to being on the other side of that, because chemo and double mastectomy are like the two biggest hurdles of my cancer journey. And then- I hope the immunotherapy and reconstruction are a little bit simpler after that.
[00:16:08] Adam Walker: Well, we’ll be we’ll be rooting for you for sure. So, Thank you … all right. So let me zoom out for the last couple questions here. You’re a part of Komen’s Don’t Fail the Girls campaign this National Breast Cancer Awareness Month. What made you, you know, decide to participate?
[00:16:25] Isabel O’Gara: Yeah. So I had one of the producers from Civic, which is the media company that was doing the filming and editing and production, reach out to me on Instagram because I’ve shared very openly about a lot of my journey there.
[00:16:40] And she was intrigued by my story. I thought it was spam first, because I was like, I didn’t… It was from someone I didn’t follow, and it’s like, “Do you want to come down to New York for this shoot?” I was like, “Okay, either this is real or I’m going to get murdered.” Yes. Yes.
[00:16:54] Yeah.
[00:16:55] Adam Walker: That’s right. Yeah.
[00:16:56] Isabel O’Gara: I loved the message in what Don’t Fail the Girls is aiming to spread awareness for, like specifically for the younger demographic and for underrepresented communities of which I sit at the intersection of.
[00:17:11] So I I am of Asian-American Pacific Islander descent. That is a cohort of breast cancer patients where incidence is rising. It is also rising in early, or in young adults for early onset cancer rates. Both of those, the intersection of both of that has made me super passionate to be a part of this campaign so that a woman, a mom, a teenager, God forbid can look at me and s- and see this, this could happen to you at any point in your life and someone of any background.
[00:17:51] And especially I, I- Felt it was so powerful to be able to do it with my port visible, with my hair is just kind of starting to come back bald, postpartum, and kind of be, like, the walking poster child of… I pray that this doesn’t happen to anybody else, but statistics say it will.
[00:18:19] So I was inspired to do it because I want people to hear my story and see my image and say Oh,” maybe this will make me question the lump I found in my pregnancy,” or, “Maybe,” this thing in postpartum that I thought was just related to breastfeeding, I should really go get checked out.” or just, or even if it’s outside of breast cancer, if it’s any r- young adult that feels something is off and is dismissed because they are too young, will remember my story and remember that I’m 30 years old going through breast cancer and say, “No,” this”
[00:18:59] There is no age at which cancer won’t affect you. Cancer can get you at any age. Being dismissed by a doctor because you’re too young is unacceptable. And I, yeah, I just really wanted to be able to bring a, I guess, an active patient perspective to the campaign because, because yeah I don’t want to wait until I’m out of treatment to speak up and spread awareness.
[00:19:26] I want this to be something, yeah that to me it was important to build a platform from inside active treatment. And also similarly, I did, I walked in New York Swim Week a couple weeks before I did this campaign with Komen with Post Swim Wearing Chemo Club, where all of the models were either cancer survivors or patients, and just- I think it’s really important that we continue to give a platform to cancer patients and survivors so that the voice of the patient is heard and recognized whether it’s for medical decisions or I guess just broader awareness.
[00:20:13] And it’s also what compelled me to start sharing my story online. If m- sharing my story can either help another patient not feel alone in the journey or feel inspired to go get checked even if it’s just one person, I will find all of it extremely worth it.
[00:20:32] Adam Walker: Yeah. And rightly so. Well, for my la- for my last question, let’s go back.
[00:20:36] You mentioned something about sort of that, that young person or that mom that, that might feel like something’s wrong and might be being told that nothing is. What is your singular message to that mom right now?
[00:20:52] Isabel O’Gara: Yeah. I think it would be that you know your body especially in pregnancy and postpartum, you have this very- Like out of body connection to your body that like, you just feel so connected to yourself and your unborn child that if you think something’s wrong, you are the expert in it.
[00:21:22] You are the expert of your own lived experience. If a doctor dismisses you, advocate for yourself or go find another one. R- find someone that will take you seriously if y- if there’s a voice in your head telling you that something is seriously wrong. But also more broadly, because God forbid this, like it turns into a diagnosis, remind yourself that you taking care of yourself is the best thing you can do for your family.
[00:21:56] I know we just talked about that. It’s hard to put it in practice sometimes as a mom. But do not dismiss a sign from your body because you’re tired, you’re busy, you’re overwhelmed. All of those feelings are extremely valid during the throes of having young children. But if there’s a concern, raise one and get the proper checks to make sure that we decrease this like 150-ish day delay from identification of a, something feeling wrong to diagnosis because we are our own best advocates.
[00:22:39] I also know as moms, we… I would never stop if I ne- if I felt something was wrong with my child until I felt that they had the right care. We need to do the same thing for ourselves. And yeah I also just hope that we continue to Have a system that takes all complaints seriously.
[00:23:06] But in the absence of that make sure you’re doing your best to represent yourself and tell yourself you are not being dramatic, you are not catastrophizing. A lump that is growing is probably not normal. Take care of yourself first.
[00:23:23] Adam Walker: That’s right. That’s right, take care of yourself first.
[00:23:25] That’s right. Well, Isabel I, I appreciate you, you know, giving us insight into your world and into your current treatment and preparing for, you know, for the next thing as well and just sharing your story for, with us today. I think it really is profoundly impactful. Thank you for joining us on the show today.
[00:23:45] Isabel O’Gara: Thank you so much for having me.
[00:23:47] Adam Walker: And I would also just last thing say to you you’re a great mom. You’re, you’re- Thank you … You’re putting your, you’re putting your health first, which is the best thing you can do for your kids. So-
[00:23:58] Isabel O’Gara: Yes …
[00:23:59] Adam Walker: I would strongly encourage you to continue doing that, and to never, ever feel guilty about doing it, because that is- Right
[00:24:06] that is the greatest thing that you can do for them. So.
[00:24:08] Isabel O’Gara: Thank you. Yeah. Yeah.
[00:24:10] Adam Walker: And to all of our listeners, if something feels off in your body during pregnancy, postpartum or otherwise, you don’t need permission to push for answers. Please advocate for yourself and for what you need. This October, Isabel decided to be a part of our Don’t Fail the Girls campaign because breast cancer is personal for her, and she knows how much is at stake.
[00:24:32] She’s using her voice to help make breast cancer impossible to ignore, and to help drive the research, support, and action needed to end it. For more information on breast health and your risk, visit komen.org, our breast care helpline is also available at 1-877-465-6636 or by email at helpline@komen.org to support you through diagnosis, treatment, and beyond.
[00:25:02] Thanks for listening to Real Pink, a weekly podcast by Susan G. Komen. For more episodes, visit realpink.komen.org, and for more on breast cancer, visit komen.org. Make sure to check out @susangkomen on social media. I’m your host, Adam. You can find me on Twitter @ajwalker or on my blog, adamjwalker.com